唐氏综合症患儿意大利父母的电子健康内容共享和情感支持:一份定性报告

IF 1.9 4区 医学 Q1 EDUCATION, SPECIAL
Valentina Boursier, Francesca Gioia, Federica Coppola, A. Schimmenti
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引用次数: 3

摘要

摘要有特殊医疗保健需求的儿童的父母在互联网上搜索以了解和分享与健康相关的信息。事实上,在线社区(OC)通常会增加知识和技能,减少孤独感和痛苦感。目前的研究探讨了由唐氏综合症儿童父母组成的意大利OC的内容和功能。根据网络图方法,通过潜在专题分析对数据进行分析。出现了五个主要主题:电子团体、孩子、规定的专业技能、为人父母以及个人经历。研究结果说明了OC中父母和唐氏综合症儿童之间的复杂关系,探讨了唐氏综合症患儿父母反复出现的心理主题。在电子小组中,可以描述特殊的儿童和父母的挑战,分享担忧、矛盾的情绪和基于经验的信息,对抗唐氏综合症的困难和社会孤立。临床医生和医疗保健专业人员应考虑强迫症的相关优势,以加强唐氏综合症父母和儿童的医疗保健。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
eHealth content-sharing and emotional support among Italian parents of children with Down Syndrome: A qualitative report
ABSTRACT Parents of children with special healthcare needs search the Internet to learn about and share health-related information. Indeed, online communities (OCs) often increase knowledge and skills, decreasing feelings of isolation and distress. The current study explored the content and functioning of an Italian OC comprising parents of children with Down Syndrome. Following a netnographic method, data were analysed through the Latent Thematic Analysis. Five main themes emerged: the e-group, the child, prescriptive knowhow, being a parent, and personal experience across time. The findings illustrated the complex relationship between parents and children with Down Syndrome within the OC, exploring psychological themes recurring in parents of children with Down Syndrome. Within the e-group, special children and parental challenges can be described, sharing concerns, conflicting emotions, and experience-based information, countering Down Syndrome difficulties and social isolation. Clinicians and healthcare professionals should consider the OCs-related advantages to enhance the healthcare of parents and children with Down Syndrome.
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来源期刊
CiteScore
3.40
自引率
7.70%
发文量
35
期刊介绍: Journal of Intellectual & Developmental Disability (formerly the Australia and New Zealand Journal of Developmental Disabilities) is the official journal of the Australasian Society for the Study of Intellectual Disability (ASSID). JIDD is an international, multidisciplinary journal in the field of intellectual and developmental disability. The journal publishes original qualitative and quantitative research papers, literature reviews, conceptual articles, brief reports, case reports, data briefs, and opinions and perspectives.
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